When The Dangerous Quest for "Normal" Turns Deadly



Issy is a fourteen year old girl from Michigan.  Issy is autistic.  Issy's Facebook Page lends us a quick glimpse of who she is .  I see an innocent child.  Yes, a child, not a teenager.  Issy's photo is one of innocence.  Her Facebook page shows a pictures of baby dolls, not the latest video game, musical group or fashion trend.  So, it's easy to assume that Issy's maturity level is not that of a typical fourteen year old, but close to a child of five or younger.  Issy is the the epitome of innocence.  Her story is the example of what can go wrong when we become so focused on trying to make our children into what we think they should be rather than appreciating them for the uniqueness they possess.

What happens when a parent of an autistic child becomes so caught up in trying to make that child "normal" that she loses all sense of normalcy herself?

Kelli Stapleton is what happens.  Kelli Stapleton attempted to kill her autistic daughter and is now being hailed a victim by many.  Can we be victims of our own doing?  This is a classic case of what happens when someone becomes so focused on doing what society thinks instead of doing what is right.  Getting so caught up in trying to "fix" your child that you completely lose focus on what is important in life is not an excuse for filicide.  Kelli spent countless hours writing her blog "The Status Woe" about her martyr-like actions to fix Issy; to make her normal; to save her from autism.  Frustrated with the system, frustrated because she wasn't getting what she wanted, or felt she needed, from and for Issy, she made the decision to kill her own child.  Her blog is not only focused on fixing Issy, it's also full of self-indulging pats on the back.  Kelli is no victim, she's no martyr, she's a poor excuse for a mother and were it not for the quick actions of others, she would be a murdered. 

Kelli Stapleton loaded Issy into the family van and drove across town.  She filled several grills with charcoal, closed all the doors and windows and lit the charcoal.  And waited, and waited, and waited.  I can only imagine what Issy faced; the stinging eyes, the burning lungs, the coughing, the fear, the begging, the confusion, the inability to understand why this woman who had fought tirelessly to protect her is not only doing nothing to ease the pain, but is the one who struck the match!  Yes, Kelli stayed in the van with Issy (or at least was found unconscious in the van).  That is perhaps the only unselfish thing she did for Issy, yet since she was planning to leave her husband a widower and her other two children motherless, I see her more as a coward.  She did call her husband and said something that let him know things were not good.  He was able to alert authorities and they found the van before they were both overcome from the carbon monoxide.  Kelli woke up soon after being found; after three days, Issy was still in a coma.  I have to wonder if the coward took something to make herself sleep, that may have suppressed her respiration and prevented her from breathing as much carbon monoxide as poor Issy.  What does Issy face now?

I have cared for many children following traumatic brain injury caused by anoxia.  That is what Issy could have easily suffer from as well.  Death; at one point, the doctors did think she was not going to live.  Most of the children I’ve cared from were from near-drowning, but the mechanism of injury does not change the fact that that child’s brain was starve of precious oxygen and this is a devastating and irreversible injury.  Issy got lucky, she survived with minimal residual affects.  However, what could have happened remains in my mind. She did suffer from short-term memory loss, gait unsteadiness, increased impulsiveness and headaches.  However, it could be worse, she could have never awakened and spent the rest of her life in a coma.  In that vegetative state, she would have required most of the following:  A tracheostomy in her neck to breathe through, a ventilator connected to that tracheostomy, a feeding tube in her stomach to provide nutrition, constant nursing care to feed, provide hygienic care, change diapers, reposition her every couple hours to attempt to prevent bedsores, splints and braces to attempt to prevent contractures.  If that isn’t bad enough, it’s way worse.  The lack of mobility brings on a plethora of other issues such as bowel immobility, muscle atrophy and a huge increase in risk of infections such as pneumonia.  Often, these kids also suffer from what we call neuro-storming.  Neuro-storming is gut-wrenching to watch, I can’t imagine how awful it is to live through.  After nineteen years of nursing, I still get a knot in the pit of my stomach when I watch a child during one of these episodes.  Their damaged brains cannot regulate body temperature, so their temperatures will fluctuate from extremely low to extremely high; sometimes as high as 106-108 degrees Fahrenheit.   During these storms, their bodies become rigid, their extremities so stiff that the veins bulge, their head curls back toward their heels and their jaws clench.  Often, they bite their tongues during these storms.  They sweat so severely that their clothing and bed linens have to be changed several times.  These “storms” can last anywhere from a few minutes to several hours and may reoccur every few minutes to hours.  It is excruciating to watch and it has to be damn painful to experience!  Recovering from an anoxic brain injury is difficult and in my experience, almost impossible.  Of course, in most anoxic cases, the severity depends on the amount of time the brain was starved of precious oxygen.  I pray this precious child has no lifelong no residual effects from her mother’s selfish act, but my experience and fear tell me this is unlikely.  A child who already had behavior problems, who was already impulsive, who was already facing a difficult road is going to have a much harder time recovering from a brain injury.  

The online support for Kelli Stapleton is sickening.  There are many people who are empathetic and did not want to see her punished; they labeled her a victim of a poor support system.  They, like her, blamed the system for failing Issy.  The system did not strike that match, Kelli Stapleton was the one who intended to kill her child.  I admit, the support for persons and families with autism is sparse and is something that needs to be strongly advocated, but that deficiency does not begin to justify this woman's actions.  There is nothing, I repeat, NOTHING that would make me ever consider killing any child, especially my own precious child. Yes, the road is tough at times.  Life with autism is not the life that anyone dreams of and no matter how hard you try to not let it rule your life, in the end, it changes you so much that while it may not have ruled your life, it formed it. 
 
Since this tragedy, I’ve had the pleasure of reading and interacting with a group on facebook who was determined to see that Kelli was prosecuted to the fullest extent of the law for this horrific act.  My interaction with these people has been eye-opening.  You see, a large number of the members of this group are autistic themselves, so I have had the pleasure of understanding things from their perspective.  I’ve always been a staunch critic of excessive and risky therapies for our children, but never really looked at them as abusive.  These beautiful people have opened my eyes to a different view.  Intensive therapy is a form of abuse.  Yes, the parents may be acting out of desperation, but so is the mother who allows her boyfriend to beat her child because she fears losing his income.  She’s acting out of desperation as well.  In both scenarios, the ends does not justify the means.  Chelation is unproven and highly dangerous.  Children have DIED from chelation therapy.  There is no proven “cure” for autism, so feeding your child hundreds of vitamins, forcing them to endure constant behavioral modification (or as Issy’s mother called it, “intense”), hyperbaric chamber treatments and the numerous other claims are all like gambling with your child’s life, and future.  Sure, some are probably safe and worth the gamble, but you have to consider the risk to the child (physically and mentally).  I always figured if we want to gamble, we want to gamble safely.  We’ve never subjected Jon to intense therapies and we damn sure have done nothing to medically alter his health.  We lean more toward moderate speech therapy and behavior modification only if the action is unsafe for him or rude toward others.  The only intense “therapy” we have done with Jon is love him like there is no tomorrow and appreciate him for his uniqueness.  No, he may not grow up to be a rocket scientist, he probably will not even go to college, but he is happy and he knows without a doubt that he’s loved.  What do unselfish parents want?  Happy and loving children.  We got that!
Kelli Stapleton is NOT a victim, although she attempts to portray herself as one.  Nor does Kelli represent me as the parent of an autistic child.  There is nothing I would do to harm my child.  To victimize Kelli and portray Issy as the villain, if she were the cause and root of all the problems is despicable.  Issy is a child, and a mother’s job is to PROTECT and NURTURE (which I saw very little reference to in her blog).  I’m disgusted with those who support her.  Her sentence should be the same as a strangers would be if he had struck that match!

A great, objective, and recent article on Kelli and this case can be found here.

~continuing to pray for Issy

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